Impact on parents of cerebral palsy in children: A literature review;Impact sur les parents de la paralysie cérébrale chez l'enfant: revue de la littérature

Archives de Pediatrie

Volumn 18, Issue 2, 2011, Pages 204-214

  Guyard, A ^a   Fauconnier, J ^a,b   Mermet, M A ^a   Cans, C ^a,b  

^a UNIV GRENOBLE ALPES   (France)

^b GRENOBLE UNIVERSITY HOSPITAL   (France)

Author keywords

[No Author keywords available]

Indexed keywords

BEHAVIOR DISORDER; CAREGIVER BURDEN; CEREBRAL PALSY; CHILD; CHILD CARE; CHILD PARENT RELATION; CONSENSUS DEVELOPMENT; DEVELOPMENTAL STAGE; DISEASE SEVERITY; FAMILY RELATION; FINANCIAL MANAGEMENT; HANDICAPPED CHILD; HEALTH STATUS; HIGH RISK POPULATION; HOME ENVIRONMENT; HUMAN; INTELLECTUAL IMPAIRMENT; MALADJUSTMENT; MEDICAL LITERATURE; MEDLINE; MOTOR DYSFUNCTION; PARENTAL ATTITUDE; PATIENT AUTONOMY; PRACTICE GUIDELINE; PSYCHOLOGICAL WELL BEING; PSYCINFO; SHORT SURVEY; SOCIAL INTERACTION; STANDARDIZATION; SYSTEMATIC REVIEW; TIME; WORK DISABILITY;

EID: 79251640950     PISSN: 0929693X     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.arcped.2010.11.008     Document Type: Short Survey

References (58)

1. Cans C., De-la-Cruz J., Mermet M.A. Epidemiology of cerebral palsy. Paediatr Child Health 2008, 18:393-398.
2. Sellier E., Surman G., Himmelmann K., et al. Trends in prevalence of cerebral palsy in children born with a birthweight of 2,500g or over in Europe from 1980 to 1998. Eur J Epidemiol 2010, 25:635-642.
3. RHEOP. Enfants avec déficience sévère génération 1999, Observatoire périnatal données 2007. Rapport annuel 2008. www-rheop.ujf-grenoble.fr (accessed 02.07.10).
4. Pelchat D, Bourgeois-Guerin V. L'expérience de l'incertitude chez les pères et mères dans le processus de l'annonce de la déficience motrice cérébrale chez leur enfant. Rech Soins Infirm 2009;96:41-51.
5. Ebersold S., Bazin A.L. Le temps des servitudes: la famille à l'épreuve du handicap 2005, Coll des Sociétés, PU Rennes, p. 228.
6. Brehaut J.C., Kohen D.E., Raina P., et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?. Pediatrics 2004, 114:e182-e191.
7. Wang B., Chen Y., Zhang J., et al. A preliminary study into the economic burden of cerebral palsy in China. Health Policy 2008, 87:223-234.
8. Salmi L.R. Lecture critique et communication médicale scientifique 2002, Elsevier, Paris, p. 360.
9. Curran A.L., Sharples P.M., White C., et al. Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Dev Med Child Neurol 2001, 43:529-533.
10. Sen E., Yurtsever S. Difficulties experienced by families with disabled children. J Spec Pediatr Nurs 2007, 12:238-252.
11. Roberts K., Lawton D. Acknowledging the extra care parents give their disabled children. Child Care Health Dev 2001, 27:307-319.
12. Saigal S., Burrows E., Stoskopf B.L., et al. Impact of extreme prematurity on families of adolescent children. J Pediatr 2000, 137:701-706.
13. Balkrishnan R., Manuel J.C., Smith B.P., et al. Longitudinal examination of health outcomes associated with botulinum toxin use in children with cerebral palsy. J Surg Orthop Adv 2004, 13:76-80.
14. Rigby P., Reid D., Schoger S., et al. Effects of a wheelchair-mounted rigid pelvic stabilizer on caregiver assistance for children with cerebral palsy. Assist Technol 2001, 13:2-11.
15. van der Burg J., Jongerius P., van Limbeek J., et al. Drooling in children with cerebral palsy: a qualitative method to evaluate parental perceptions of its impact on daily life, social interaction, and self-esteem. Int J Rehabil Res 2006, 29:179-182.
16. Wallander J.L., Venters T.L. Perceived role restriction and adjustment of mothers of children with chronic physical disability. J Pediatr Psychol 1995, 20:619-632.
17. Pirila S., Van Der Meere J., Seppanen R.L., et al. Children with functional motor limitations: the effects on family strengths. Child Psychiatry Hum Dev 2005, 35:281-295.
18. Ong L.C., Afifah I., Sofiah A., et al. Parenting stress among mothers of Malaysian children with cerebral palsy: predictors of child- and parent-related stress. Ann Trop Paediatr 1998, 18:301-307.
19. King G., King S., Rosenbaum P., et al. Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol 1999, 24:41-53.
20. Raina P., O'Donnell M., Rosenbaum P., et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005, 115:626-636.
21. Green S.E. "What do you mean what's wrong with her?": stigma and the lives of families of children with disabilities. Soc Sci Med 2003, 57:1361-1374.
22. Porterfield S.L. Work choices of mothers in families with children with disabilities. J Marriage Fam 2002, 64:972-981.
23. Mugno D, Ruta L, D'Arrigo V G, et al. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 2007:5;22. http://www.hqlo.com/content/5/1/22 (accessed 02.07.10).
24. Pimm P.L. Some of the implications of caring for a child or adult with cerebral palsy. B J Occup Ther 1996, 59:335-341.
25. Florian V., Findler L. Mental health and marital adaptation among mothers of children with cerebral palsy. Am J Orthopsychiatry 2001, 71:358-367.
26. Blacher J., McIntyre L.L. Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact. J Intellect Disabil Res 2006, 50:184-198.
27. Wanamaker C.E., Glenwick D.S. Stress, coping, and perceptions of child behavior in parents of preschoolers with cerebral palsy. Rehabil Psychol 1998, 43:297-312.
28. Ryan S.E., Campbell K.A., Rigby P.J., et al. The impact of adaptive seating devices on the lives of young children with cerebral palsy and their families. Arch Phys Med Rehabil 2009, 90:27-33.
29. Manuel J., Naughton M.J., Balkrishnan R., et al. Stress and adaptation in mothers of children with cerebral palsy. J Pediatr Psychol 2003, 28:197-201.
30. Horton T.V., Wallander J.L. Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabil Psychol 2001, 46:382-399.
31. Joesch J.M., Smith K.R. Children's health and their mothers' risk of divorce or separation. Soc Biol 1997, 44:159-169.
32. Saddler A.L., Hillman S.B., Benjamins D. The influence of disabling condition visibility on family functioning. J Pediatr Psychol 1993, 18:425-439.
33. Lach L.M., Kohen D.E., Garner R.E., et al. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil 2009, 31:741-752.
34. Lin S.L. Coping and adaptation in families of children with cerebral palsy. Except Child 2000, 66:201-218.
35. Barlow J.H., Cullen-Powell L.A., Cheshire A. Psychological well-being among mothers of children with cerebral palsy. Early Child Dev Care 2006, 176:421-428.
36. Wiegner S., Donders J. Predictors of parental distress after congenital disabilities. J Dev Behav Pediatr 2000, 21:271-277.
37. Skok A., Harvey D., Reddihough D. Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. J Intellect Dev Disabil 2006, 31:53-57.
38. Ketelaar M., Volman M.J.M., Gorter J.W., et al. Stress in parents of children with cerebral palsy: what sources of stress are we talking about?. Child Care Health Dev 2008, 34:825-829.
39. Indredavik M.S., Vik T., Heyerdahl S., et al. Low-birthweight adolescents: quality of life and parent-child relations. Acta Paediatr 2005, 94:1295-1302.
40. Noojin A., Wallander J. Perceived problem-solving ability, stress, and coping in mothers of children with physical disabilities: potential cognitive influences on adjustment. Int J Behav Med 1997, 4:415-432.
41. Lloyd T., Hastings R.P. Parental locus of control and psychological well-being in mothers of children with intellectual disability. J Intellect Dev Disabil 2009, 34:104-115.
42. McConachie H., Huq S., Munir S., et al. A randomized controlled trial of alternative modes of service provision to young children with cerebral palsy in Bangladesh. J Pediatr 2000, 137:769-776.
43. Eker L., Tuzun E.H. An evaluation of quality of life of mothers of children with cerebral palsy. Disabil Rehabil 2004, 26:1354-1359.
44. McCubbin M.A. Family stress and family strengths: a comparison of single- and two-parent families with handicapped children. Res Nurs Health 1989, 12:101-110.
45. Tong H.C., Haig A.J., Nelson V.S., et al. Low back pain in adult female caregivers of children with physical disabilities. Arch Pediatr Adolesc Med 2003, 157:1128-1133.
46. Jung M.Y., Lee K.H., Yoo E.Y., et al. Risk factors associated with low back pain in mothers of children with cerebral palsy. Pain Clin 2007, 19:93-98.
47. Turnbull A.P., Summers J.A., Lee S.H., et al. Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Ment Retard Dev Disabil Res Rev 2007, 13:346-356.
48. Rentinck I.C.M., Ketelaar M., Jongmans M.J., et al. Parents of children with cerebral palsy: a review of factors related to the process of adaptation. Child Care Health Dev 2007, 33:161-169.
49. Stein R.E., Riessman C.K. The development of an impact-on-family scale: preliminary findings. Med Care 1980, 18:465-472.
50. Trute B., Benzies K.M., Worthington C., et al. Accentuate the positive to mitigate the negative: mother psychological coping resources and family adjustment in childhood disability. J Intellect Dev Disabil 2010, 35:36-43.
51. McHorney C.A., Ware J.E. Construction and validation of an alternate form general mental health scale for the Medical Outcomes Study Short-Form 36-Item Health Survey. Med Care 1995, 33:15-28.
52. Byles J., Byrne C., Boyle M.H., et al. Ontario Child Health Study: reliability and validity of the general functioning subscale of the McMaster family assessment device. Fam Process 1988, 27:97-104.
53. Loyd B.H., Abidin R.R. Revision of the Parenting Stress Index. J Pediatr Psychol 1985, 10:169-177.
54. Einam M., Cuskelly M. Paid employment of mothers and fathers of an adult child with multiple disabilities. J Intellect Disabil Res 2002, 46:158-167.
55. Dziak E, Janzen B L, Muhajarine N. Inequalities in the psychological well-being of employed, single and partnered mothers: the role of psychosocial work quality and work-family conflict. Int J Equity Health 2010;9. http://www.equityhealthj.com/content/9/1/6 (accessed 02.07.10).
56. Bronfenbrenner U. The ecology of human development 1979, Harvard University Press, Cambridge (MA).
57. McCubbin H.I., Patterson J.M. The family stress process - the double ABCX model of adjustment and adaptation. Marriage Fam Rev 1983, 6:7-37.
58. Hudson A., Reece J., Cameron C., et al. Effects of child characteristics on the outcomes of a parent support program. J Intellect Dev Disabil 2009, 34:123-132.